Maternal depression: the cost of caring for a child with intractable epilepsy.

The aims of this study were to: (1) determine the prevalence of depression and sleep disruption in mothers of children with intractable epilepsy, and (2) assess which family factors and neurologic/behavioral characteristics of a child with epilepsy correlate with maternal depression. Mothers of children aged 2-18 years with intractable epilepsy completed a Beck Depression Inventory and Pittsburgh Sleep Questionnaire for themselves, and a Child Behavior Checklist, Attention Deficit Hyperactivity Disorder Rating Scale, and Scale of Independent Behavior-Revised for their child. Charts were reviewed for age at seizure onset, seizure frequency and type, number of failed treatments, and presence of autism. Mothers were queried regarding family type, educational level, income, and number of children in the home. Fifty-two of 80 (65%) eligible mothers returned completed questionnaires. Forty-five percent demonstrated elevated scores on the depression questionnaire, with 25% in the moderate/severely depressed range. Sleep disruption was reported in 67%. Maternal depression correlated with high attention deficit and problem behaviors in children, but not with most epilepsy-related variables, autism, adaptive delay, or family income.

Depression, anxiety, and quality of life in siblings of children with intractable epilepsy.

Thirty-seven siblings (aged 6-18) of children with intractable epilepsy were surveyed regarding their anxiety, depression, and quality of life, by both self-report (Revised Children's Manifest Anxiety Scale, RCMAS; Children's Depression Inventory, CDI; and Peds QL) and parental report (Child Behavior Checklist, CBCL). Completed forms were returned by 37 of 58 (64%) eligible families. No sibling had a score in the clinical range on the CDI, and only 2 of 37 (6%) scored in the clinical range on the RCMAS, a proportion similar to the normative population. In contrast, 25% were rated by their parents to have elevated Internalizing Behaviors scores on the CBCL. There was a trend for PedsQL scores to be lower than the normative mean. Comorbid behavior and attention problems in the child with epilepsy and sibling CDI and RCMAS scores correlated significantly with self-reported quality of life. However, other epilepsy, child, and family variables (income, parental education, family function, maternal depression) did not correlate. We conclude that siblings of children with intractable epilepsy are functioning well overall and have a good quality of life.

Family function in cognitively normal children with epilepsy: impact on competence and problem behaviors.

A cross-sectional cohort of 82 cognitively normal children with epilepsy attending the pediatric neurology clinic, who were aged 6-17 years and who had a similarly aged sibling without seizures or cognitive delay, were identified. The parent was asked to complete the Family Assessment Measure III (FAM-III) as well as the Child Behavior Checklist (CBCL) for both the child with epilepsy and his or her sibling. The Overall Rating Score on FAM-III did not differ significantly from the normative mean, although families scored significantly better on the Involvement subscale and significantly worse on the Role Performance subscale. Moderate correlations were found between competence and behavior problems and family function in both children with epilepsy and their siblings. In families functioning at the highest level, both cohorts did well. In those at the lowest level, approximately half of the children in either cohort had problems. For average functioning families, behavior and competence issues were more frequent in children with epilepsy than their siblings.

Sleep disturbances in children with epilepsy compared with their nearest-aged siblings.

The aim of the study was to compare sleep patterns in children with epilepsy with those of their non-epileptic siblings and to determine which epilepsy-specific factors predict greater sleep disturbance. We conducted a case-control study of 55 children with epilepsy (mean age 10y, range 4 to 16y; 27 males, 28 females) and their nearest-aged non-epileptic sibling (mean age 10y, range 4 to 18y; 26 males, 29 females). Epilepsy was idiopathic generalized in eight children (15%), symptomatic generalized in seven (13%), and focal in 40 (73%); the mean duration was 5 years 8 months. Parents or caregivers completed the Sleep Behavior Questionnaire (SBQ) and Child Behavior Checklist (CBCL) for patients and controls, and the Quality of Life in Childhood Epilepsy (QOLCE) for patients. Patients had a higher (more adverse) Total Sleep score (p<0.001) and scored worse than controls on nearly all subscales of the SBQ. In patients, higher Total Sleep scores were correlated with higher scores on the Withdrawn, Somatic complaints, Social problems, and Attention subscales of the CBCL, and significantly lower Total Quality of Life Scores. Refractory epilepsy, mental retardation, and remote symptomatic etiology predicted greater sleep problems in those with epilepsy. We conclude that children with epilepsy in this current study had significantly greater sleep problems than their non-epileptic siblings.

Where do families of children with epilepsy obtain their information?

A structured interview of 84 families of children with epilepsy followed through the neurology clinic of a tertiary care children's hospital was conducted to assess the epilepsy-specific information sources accessed and the perceived accuracy of these sources. Families accessed a mean of 3.5 sources from or specifically recommended by the clinic or family doctor and 4.1 sources outside these areas. Families of children with intractable epilepsy and higher-educated parents, but not those of higher socioeconomic status, consulted more extensively. The perceived accuracy of information rated highest for clinic-recommended Internet sites (100%), the clinic nurse (97%), and the neurologist (93%). Sources external to the clinic had variable ratings; those with the greatest perceived accuracy included other Internet sites or family members within the medical profession (85% for both) and lay organizations (84%). Friends within the medical profession, other families, and complementary health care providers also ranked highly. Recommendation of sites and books by epilepsy clinics is more helpful than general handouts.

Is a fast necessary when initiating the ketogenic diet?

The purpose of this study was to determine time of onset of ketosis and efficacy when the classic ketogenic diet is initiated at full calories without a prior fast in children with epilepsy. A retrospective hospital and neurology clinic chart review was done of all 14 children commenced on the classic ketogenic diet at full calories without a prior fast between January 1, 1997, and May 31, 2001, to determine time to ketosis, time to good ketosis (urine ketones > or =80 mg/dL), and success of the ketogenic diet. Median age at diet initiation was 63 months (25th-75th percentile 47-149 months). There were 7 girls and 7 boys. Four had symptomatic generalized epilepsy, whereas the remainder had partial seizures +/- secondary generalization. Twelve of 14 children suffered seizures on a daily basis prior to the ketogenic diet. Six were commenced on the diet as outpatients, whereas 8 were admitted to hospital. No patients were fasted. All admitted patients were started on a 1:1 ketogenic ratio at full calories for the first 24 hours and advanced to a 3:1 or 4:1 ratio over 3 to 4 days, while outpatients were started on a 1:1 or 2:1 ratio and similarly advanced. Thirteen of 14 patients were successfully started on the diet, with 1 developing vomiting and food refusal during the initial hospitalization but after ketosis was established. One child was lost to follow-up after initial hospital discharge. Information regarding time to ketosis was determined for all inpatients. Mean time to onset of ketosis was 33 hours (range 17 to 48) and to good ketosis, 58 hours (range 40 to 84). Five of 12 children (42%) experienced success with the ketogenic diet, and all of these had their antiepileptic medications either withdrawn (n = 3) or decreased (n = 2). The ketogenic diet can be effectively initiated without a fast in children with epilepsy. Time to ketosis and diet efficacy are similar to protocols that use a fast.